Clinging to the Wreckage

CRUMMOCK BLOGEver since my Lupus diagnosis I’ve been in denial about just how much it has shaped my life. I realised I’ve been “clinging to the wreckage” of what I thought my “old life” was like. Scared to let go and embrace the fresh challenges that life now brings me. It’s hard to explain to someone who hasn’t experienced long term illness just how it affects daily life. People ask “How are you?” and of course I answer “Oh, I’m fine, mustn’t grumble.. you know…”. What I really want to say is that today was a “good day”. I managed to get myself vertical by 9am, dress, eat breakfast and meet  a friend for coffee. I spent the afternoon “in recovery” on the sofa, my legs refusing to hold me upright because the effort of simply washing my hair, getting dressed and out of the house was  as much as my body could take for one day.  These things you take for granted, that you do without thinking are herculean tasks for me on a “bad” day -and here’s the cruellest thing – I never know when a bad day is coming. I might have a lovely week, plenty of sleep and little stress. Then a sarky email or snide remark will send my stress levels soaring. I’ll lie awake worrying about a friend going through a rough patch and Bam! I can’t even get out of bed and dress myself.

I tell you this is in the spirit of “full disclosure”. So that when you tell me how well I look or how “lucky” I am that my husband “lets” me stay at home all day instead of having a “real” job or jokingly call me a “slacker” because I answered the door in my PJs at 3 in the afternoon you may understand why you get the rough edge of my tongue or the benefit of my great repetoire in sarcastic one liners. I’d love to have a “proper” job, but try explaining to an employer that you can’t work mornings or that double vision brought on by fatigue stops you getting behind the wheel on a regular basis. Self employment really is my only option. Ask me about the freelance life and I’ll wax lyrical about the freedom to choose my own hours, work from home. But the truth is I envy you your mundane 9 – 5.

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We spent Easter week in Cockermouth at my Mother in Law’s.  “Lovely daughter” came over for a few days and in between over consumption of chocolate eggs we managed a cosy Mother – Daughter lunch in town, a mooch around the shops and best of all, a family outing to Crummock.

This place holds special significance for me. It’s one of the first places Mr T took me to when we first met. We used to give our dog a regular  bath in the lake and it’s where Mr T tried unsuccessfully to teach his little girl (and his wife) how to skim stones. My M-i-L is dismissive about it’s charms. The walk is too flat, there are too many tourists and you have to pay for parking. All this is true; and yes, you have to dodge toddlers in wellies too big and dog walkers who haven’t quite mastered the extending lead. But you’ll be rewarded with some of the finest views to be had at ground level.

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I love this place, no steep gradients mean I can walk further and for longer without pleading tiredness. There are benches where you simply “must” stop and admire the view. It’s a chance to breathe fresh air, to reflect and just occasionally have a moment of clarity. All of a sudden I realised, that by denying the daily struggles and  by pretending all is well and life is lovely I was kidding myself more than anyone. The fact is life can be shit. Not just for me, but for all of us. Mr T has many crappy days at the office, my neighbour has MS and endures far more than I do. Another friend is a carer, another recently bereaved. There are days when we all have crappy lives.

So, here on a shingle beach, with the sun trying hard to shine through grey skies I reached an epiphany of sorts. I’m going to stop pretending life is great when it isn’t. But equally, I’m going to do my best to find the sunshine on every rainy day. So yes, it took me until lunch time to get of bed the day we went to Crummock and I didn’t have a shower or wash my hair first. But I got to see lambs in the field, hold Mr T’s hand as we walked and do the things normal people do.

No more excuses. No more pretty Instagram pics posted from bed giving truth to the lie that all is well when it’s not. Instead, lots of laughter at my own expense. An admission that mooching around in PJs for most of the day is acceptable every once in a while – anyway – that’s practically uniform for most freelancers isn’t it? A late lunch with friends instead of morning coffee is OK and admitting that an evening in the pub means a morning in bed (and not because of a hang over) is not an admission of failure. It’s time to let go of what might have been and accept what will be.

Feel free to remind me of this optimism and positive attitude next time I bend your ear about how unfair life is. Then pour me strong coffee, cut me a large slice of cake and join me on the sofa. I didn’t choose to live life in the slow lane, but you know what? It’s a pretty darned good place to be.

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  1. The first time I really got a grasp of what life can be like for people with long term, unpredictable illnesses such as lupus, ME, fibromyalgia, etc. was when I read a blog post about spoon theory. Well done for writing this post; social media makes it too easy to present a picture of perfection which then feeds into an overall sense of failure because you can’t consistently achieve it. Take care, Tracey

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  2. Great post. Shifting mindsets and expectations is so hard for anyone! I haven’t experienced long term health issues myself but I know people with MS or chronic fatigue. These kinds of posts really help those of us who don’t understand what it is like, as well as those who are going through it themselves. Here’s to more good days! x

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  • Pretty!
 Took Mr T to Chester Maker's Market today. Ho got pie, I came home with pretty yarn from @joannawoodpaint (oh and cheese, curry sauce, cake, more cheese, smoked salmon and secret presents for lovely friends oh and cheese -with rioja and caramelised onion - have you guessed we love cheese!!)! Really hope you make this a regular @_makersmarket xxx
#knittersofinstagram #handdyed #indiedyer #sockyarn #madenotmanufactured #100daysofwool Gin! Not just any old gin - Scottish gin from @inshriach now available. Sorry Walter - photo shamelessly nicked from your feed - but oh my - how fabulous! Go check this one out ladies (& gents) I just know it's going to be fabulous!
I'll be pouring myself a large g&t later and raising a glass to everyone who read or commented on my last post. We're definitely stronger together. Have a lovely weekend everyone xxx

#knitterslovegin #gin #scottishgin #gincredible #ginfriday #ginoclock #inshriach #madenotmanufactured Ruby chard, freshly picked. Going to saute it with chorizo for tea...
In other news I've got a new blog post up (link in profile) if you want to know what it's like living with a chronic illness start here...going to a bit more honest about my real life from now on.
#slowlived #thisthingcalledslowliving #bakingandmaking #ediblegarden #mygardenrightnow #permaculture #plottoplate Sometimes the best view is the one right on your doorstep. Just before I hung the washing on the line I decided to sit down, drink my coffee & be grateful... #bakingandmaking #thisthingcalledslowliving #slowlived #theartofslowliving #morningslikethese #mygardenrightnow #permaculture Old socks, new socks. Can't resist trying on newly cast off socks. On the left "old" socks in @kingcoleltd zig zag & on the right "new" socks in @coopknits Socks Yeah. 
#operationsockdrawer #toeupsocks #socksyeah #igknitters #madenotmanufactured #makeitwearit #toeuptuesday #toeupsocks #100daysofwool Weathered and worn... Beautiful, even in the rain... No knitting, just walking & enjoying the view xxx The sun is trying to come out. Wool in all it's natural undyed glory. Local, breed specific wools are the best! 
#100daysofwool #britishwool #britishyarn #herdwick #hebridean #choosewool #britishsheepbreeds 100 days of wool ... Found these lurking in my stash left over from one of last year's designs. I love all @thefibrecompany yarns, but this one is my favourite, it's a blend of wool and mohair (even a bit of British wool in there) soft to knit with, washes well & comes on all my favourite colours. Now I'm off to visit my favourite coffee shop & plan some Easter knitting...
#igknitters #100daysofwool #britishwool #lovewool #madenotmanufactured #shoplocal #notjustlakes Waste nothing. Even the tiniest bits of leftover wool can make stuff that is useful & beautiful. Collect your scraps, follow your favourite sleeve pattern and make arm warmers! 
#lovewool #loveknitting #lovewoolhatewaste #choosewool #madenotmanufactured #makersgonnamake #choosewool #zerowaste #permaculture #reloved #repurposed #upcycle #100daysofwool A good day to dry socks! I love wearing wool & knit most of my own socks (toe up, fleegle heel because I'm too lazy to graft toes or pick up stitches!!) My favourite yarns are Eden Cottage ayarns Milburn 4 ply, Sirdar Heart & Sole, Patons Kroy & West Yorkshire Spinners sock wool.
#100daysofwool #toeupsocksrock #toeuptuesday #fleegleheel #choosewool #igknitters #sockknittersofinstagram #makeitwearit Sunday blues. A gorgeous blend of merino & cotton called Coast, bought from @tangledyarnuk . I love wool / cotton blends, especially when they come in such fabulous denim shades. 
#100daysofwool #choosewool #yarnlove #tangledyarnuk #doubledenim #denim #sundayblues Hands wearing handmade things holding little things... pattern for the Cavendish beanie & wristwarmers now up on love crochet & ravelry (follow link in profile). Credits: yarn is gorgeous @westyorkshirespinners beautiful styling by @clairemontyknits & photo  @mavricphotography
#crochetaddict #britishwool #100daysofwool #makersgonnamake #lovecrochet #horgolás  #uncinetto #crochetconcupiscence #crochetgirlgang #choosewool Frivolous flowers! I loved using @bordertart 's indigo yarn for this design. It has such gorgeous sheen. The pattern first appeared in @insidecrochet & is now available to download online (link in profile). I just love everything about this beautiful photo!
Credits: photo @lucymakesmyheartskip styling @clairemontyknits 
#lovecrochet #indiedyer #choosewool #crochetaddict #uncinetto  #insidecrochetmagazine #indigo #naturaldye  #merino More garter stitch love. Stripes & garter stitch are perfect partners. Knitted on the bias using simple increases & decreases makes a perfect draping wrap.Knitted with 1 ball each of Wendy Ramsdale & Louisa Harding's Grace hand dyed from my stash.
#100daysproject #100daysofwool #wipwednesday #britishwool Playing hooky! I'm suposes to be working on a crochet commission (a huge cabled blanket that's taking forever), but I am giving myself the afternoon off to enjoy this gorgeous blend of natural fibres.  I've just ordered more because it knits & crochets like a dream.
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